Friday, April 23, 2010

Another busy week

Another busy week just about over. What a week it has been. The girls had several doctor appointments on top of discouraging news and sickness. Also grandma went back home. We love and miss her.

Grandma holding her granddaughters. She sure does love them!



Haley is a superstar! She had the OCRG test this week and she passed with flying colors and is off oxygen. We are so thrilled that she is doing well in regard to her lungs. It has been nice that she is down to only one tube attached to her. Its great getting to walk around with her through out the entire house. Yeah no more oxygen tubing! Unfortunately we didn't get a good report after she had her ABR (sedated hearing test). We were told she has severe hearing loss in both ears. Supposedly the problem is fluid behind her ear drums. Haley is scheduled to see an ENT doctor in a couple of weeks to see if they can figure out what is going on behind her ear drums and get treatment to improve her hearing. She will most likely need hearing aids no matter what. Haley has developed quite a personality. She makes me laugh with the cute things she does. She is progressing with the therapy she has been getting through ECI. Unfortunately she has not rolled over yet, but she is making improvements in other areas. Haley is smiling more and it just melts my heart. Haley has made improvements in the amount of formula she takes from the bottle. She is now taking 1 1/2 - 2oz. Doesn't seem like a lot, but this is good for her. We look forward to getting that tube out of her nose sooner than later. I love it when she does something so simple that she has not done before. It's the simple things that matter the most. I just wish and hope the best for her and that she will be able to hit all milestones. She is way behind in meeting them, but in her own time she will meet them.

Haley sitting in the Bumbo chair



Haley and her cute pouty lip. She makes me laugh whenever she gets upset and that lip drops.



Rachel is sick with bronchial pneumonia. The girls were doing so well at staying healthy, but I knew eventually that one or both would get sick. Rachel is on an antibiotic and seems to be getting better only after 2 days of it. Earlier this week Rachel had a follow up visit with the ophthalmologist (Dr. Coats) and got a good report. Her eyes are doing well and she doesn't need glasses at this point. Rachel is growing well and is just about 15 pounds already. She is also making progress in different areas with the help of ECI. Rachel is such a beautiful little girl. It melts my heart to see her smile.

Rachel in the Bumbo chair



The girls together

18 comments:

  1. Glad to hear they are doing well over all, but I am sorry about Haley's hearing and Rachel's pneumonia. I know difficult these first few years are going to be - you are in my prayers.

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  2. Whoohoo on the oxygen! I know how exciting that must be! I am praying that Rachel gets better quickly and that Haley's ENT appointment goes well.

    Missy

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  3. Haley's pouty lip is the cutest thing ever! AWWW! I love it! It makes my heart melt! SOoo cute! <3 <3 <3

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  4. you are an amazing family! thank you for your courage and faith. you are all a wonderful example.

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  5. I love this post! Full of news and adorable pictures. They are such cuties! I know it is hard, I am praying for Haley's eyes and ears and Rachels lungs.

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  6. I have posted this before and I am doing it again. The hearing specialist told us that my son was totally deaf and wanted us to purchase hearing aids that was about $3000.00. My gut feeling told me he could hear and did not purchase the hearing aid. Come to find out he was too immature for the hearing test that they gave him and the finding were not correct.Thankfully he hears fine and speak well enough for familiar people to understand him. Keep up hope and maybe she will hear without the hearing aids too.

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  7. Wow the girls look great. Every little step is in improvment is great. I get so excited for the little things but to me they are huge. Does Haley already have tubes in her ears? If not that is a simple surgery and will get rid of the fluid and she might be able to hear after that. If not there are options on to help her hear. My son is deaf and he has cochlear implants. He also has mixed cereberal palsy. He was profound to severe hearing loss in both ears. The hearing aids did nothing for him. With him not sitting up much at the time he was wearing them the feedback was awful. He has had one of his implants for almost two years and the other one for a year and half. They have been the best thing ever. He hears normal with them on. He still dosen't talk much but we feel that has something to do with his cp. Sorry this was so long. Just keep your faith and you guys will get through this. I have lost a son which was one of the triplets when he was 14 months old. My other two are now four years old and there are still struggles with them. We just take one day at a time and let God handle the rest. I will pray for your little girls and you guys also. You are great parents.

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  8. i wanted to reach out and just hug these dear little girls. i hope Rachel is over her pneumonia soon and that sweet Haley will have her hearing improve.
    i love these darling little people! Thanks for such lovely pictures! Haley's little lip thing is way cute! She is adorable and Rachel gets prettier every post- well they both do, really -
    lovies!
    Erma

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  9. Wow, they are looking really grown up! They are looking more and more like themselves, if that makes any sense...both gorgeous and unique. I'll be praying that Rachel's lungs heal quickly and that you guys are about not to get too discouraged. It can be frustrating to have another setback when everyone has been doing well!

    About Haley's hearing - maybe our experience with our daughter will encourage you. She left the NICU not hearing - we were dropping books and everything to see if she would react (not where they would bother other kids, of course!), and we got no response. She failed her newborn screens numerous times and failed an ABR. They suspected fluid in her ears as well, so she got tubes, and while she was still sedated they repeated the ABR and she passed - perfectly! We've still had to retest frequently and even repeat the sedated ABR b/c she doesn't cooperate with the other hearing tests, but she keeps coming back clear, as long as her tubes are working! I know every baby is different, of course, but I'll be hoping that Haley's hearing is as easy to fix.

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  10. Amanda, my children have all required ear tubes, so hopefully there will be a simple fix that can at least improve her hearing. Mine did have a mild hearing issue before the tubes, so that is common. That pouty lip just melts my heart. One of my twins did that, he was such a cutie and still is at the age of almost 12. I think you have a great attitude about the challenges that you face and I will pray for you family.

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  11. Beautiful girls! I am so glad to hear that there is a lot of good amongst the pneumonia and hearing problems.
    My little guy was a 31 weeker and just turned a year old this week. He is just barely 15 lbs so it sounds like your girls are gaining well. My little guy was diagnosed with failure to thrive. He did start out much bigger (3 lbs 7 oz) and is older though. His sister was 13.5 lbs at a year. He has also been labeled as delayed in his gross motor skills. We are hoping he can get some therapy to help with that. He gets to go in and have a blood work up and a physical work up on Friday. It's a rollercoaster even once they are out of the NICU but one that is so worth it so that we can have these sweet, precious spirits in our home! What love and joy they bring along with a beautiful spirit!

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  12. I'm sorry to hear about the set backs, but hearing tubes/hearing aids will probably help Haley a lot. I'm sure Rachel will heal soon. She is such a fighter and will be back to normal very quick. Both girls are looking precious and Haley's pouty lip is the cutest thing! Rachel appears so "confident" in her Bumbo seat! You and Thomas are amazing parents and will be blessed for that. I continue to send lots of love and prayers your way.
    Love,
    Claudia

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  13. I don't know you, but have been following your story off and on since I heard about it. Your girls are beautiful and you are such a great mom. You seem to do it all so flawlessly! I know you're laughing, and yes, I do know the truth--all moms feel like they are failing in some areas!
    I think you're so great to keep up this blog. You will look at it with such fondness in the future! I have twin girls (do you call your girls twins or not?? curious) too and their first year is such a blur.
    Anyway, I just admire you and think you have such a cute family.

    Heather

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  14. The girls look great! If Haley does need hearing aids, it doesn't mean that things won't work out wonderfully for her. Our son has mild to moderate loss in one ear and moderate to severe in the other and he is aided, but is hearing normally with his correction. He is delayed in speech but is starting to catch up nicely, saying three word phrases now, at 2 years 9 months. If you've read our blog you'll know that our kids have faced many, many challenges due to their early start in life but are overall doing remarkably well. If you ever have any questions let me know. God bless!

    Jamie

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  15. The girls are so cute and that pouty face that Miss Haley has is making is precious!!

    I love the picture of them together!!

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  16. I am sorry to hear about the ABR results. My youngest daughter is profoundly deaf in both ears. Her hearing loss is attributed to a metabolic disorder. She had hearing aids until two and was implated at two (left ear) and 3.5 years (right ear). I wonder if we see the same ENT and Audiologist, as we are at Texas Children's also.

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